Monday, December 13, 2010

Confronting Tragedy In The Age of Social Media

I know the following post is a drastic change in style from my last blog post, but that's how I roll.  I never really know what I'm going to feel like writing until the moment strikes and the events of this past week have certainly contributed to the grist for this post.

This past week saw the sudden passing of a dear old friend from an inoperable brain tumor.  I hadn't seen him for quite some time, but we had kept up with each other's movements through mutual friends and had traded emails from time to time, filling each other in on the details of our lives.  Apparently he had become ill whilst at work, and two weeks later he was gone.  It was very quick and, by all accounts, took most people by utter surprise.  But that's cancer isn't it?  It sneaks up on you when you least expect it and with no apparent logic as to who it is going to take next and when. The world is certainly an emptier place with the loss of this gorgeous amazing man, and his passing seemed to be a culminating moment in  a week where it seemed everything was about death, no matter where I turned.

I first became aware that my friend was ill via another friend on Facebook, and then on Friday I received an email from yet another friend who said she had some bad news.  When I googled my old friend's name, I was confronted with his obituary notice on a funereal portal site of sorts, where one could log in with their Facebook profile, find all of the funeral details, leave a message for the family, light a virtual candle and shop for flowers to send to the family.  One could also build a family tree and  a perpetual tribute website for the departed all for the bargain price of some low monthly fee.  It seems that most funeral homes are now associated with a funeral portal of some type, and this isn't the first time I have seen these online tributes being offered to mourners. At first I felt a little uncomfortable with the concept, but ultimately,  I think my friend would appreciate the messages that were left for him, and when they are ready, I'm sure his family will find some solace in being able to read all of the tributes left for this wonderful gentleman.

But it did all get me thinking.  How important has social media become in dealing with death in our society?

Earlier, this last week, I accidentally stumbled upon a breast cancer blog, where, literally, a woman's dying moments were being broadcast and recorded for posterity.  From what I could gather, the lady was in the hospital and was dictating to her sister who would record it on her blog or she would send a text message, which her sister would then transcribe to the site.  It was a very strange moment for me and I felt almost ashamed that here I was, seemingly lurking on the site, intruding on this, the most sacred of life's moments.  (To avoid any issues of rubbernecking you'll understand that I don't feel comfortable identifying the site, and I don't think it would serve any purpose to do so at this point anyway.  The woman in question had passed away by the end of the week).

Today it seems that living and dying, with cancer in particular, has become a public affair.  We blog about it, we tweet about it, and we post updates on Facebook for all to see. In the world of cancer blogging, "tombstone blogs" abound; those that abruptly end with  a post from a relative informing the world of the author's passing, or just nothing at all and only our assumptions as to the fate of our virtual compadre'.  There are even Facebook pages for those that have passed on.  A dear friend of mine who died two years ago from pancreatic cancer, still has an active Facebook page administered by her sisters, where her friends still go to post messages.  A sort of virtual graveyard where one can go to peacefully converse with the departed, in a way that almost feels tangible.

Indeed, this week participants in the social media collectively grieved with the news of  the passing of Elizabeth Edwards, attorney, author, health care activist and ex-wife of wannabe presidential candidate, John Edwards.    Mrs. Edwards was diagnosed with advanced-stage breast cancer in 2004, which then metastasized in 2007 and had been living with the disease ever since.  After it was announced to the world by her family, that she had stopped receiving treatment for her cancer, this message, ostensibly her last words to the world, appeared on her Facebook status:

"You all know that I have been sustained throughout my life by three saving graces – my family, my friends, and a faith in the power of resilience and hope. These graces have carried me through difficult times and they have brought more joy to the good times than I ever could have imagined. The days of our lives, for all of us, are numbered. We know that. And, yes, there are certainly times when we aren't able to muster as much strength and patience as we would like. It's called being human.
But I have found that in the simple act of living with hope, and in the daily effort to have a positive impact in the world, the days I do have are made all the more meaningful and precious. And for that I am grateful. It isn't possible to put into words the love and gratitude I feel to everyone who has and continues to support and inspire me every day. To you I simply say: you know."

The next day, the world was informed that Mrs Edwards had died.  The outpouring of emotion on Twitter, Facebook, the blogs, and the many online articles that appeared after her death was overwhelming.  Although virtually none could have claimed to have had a personal relationship with Mrs. Edwards, it seemed like her death was a polarizing moment of sorts, especially in the online breast cancer community.   Many waxed lyrical over a life lived with "grace and dignity" and of a "peaceful death at home surrounded by family and friends".  Now we can't really know the truth about the circumstances of her death, whether she was in pain, whether she had accepted her fate, or even whether she was aware until the very end, but as a virtual group of "sisters"all dealing with breast cancer, we took comfort in knowing that she seemed to finally be at peace after a "brave and courageous" fight against metastatic breast cancer.

To me, although obviously a sad moment, her death was more of a stark and tragic reminder that breast cancer is not the "chronic disease" that many in the cancer industry and medical fraternity would have us believe.  Mrs. Edwards' death simply bought into focus, for me, the lottery-like nature of this disease.  After she was diagnosed in 2004, the same year as me, her cancer returned in 2007, like me.  Whilst I'm certain that we both had access to all that the medical profession has to offer in terms of treatment,  I've just simply been "luckier" with my disease than Mrs. Edwards,  in that I'm still here. Although treatments proliferate, even for Stage IV, their efficacy is uncertain, and what can work for one patient won't for another, for no clearly identifiable reason other than what I can only term as "dumb luck".  At that's what makes me mad when I think about her death.  That yet again, another woman has to die from this stupid disease because we can't figure out how to stop it.  We can spend all the money in the world on breast cancer education and awareness campaigns, but this didn't help Mrs. Edwards one iota, and nor does it help the hundreds of thousands of people currently living with metastatic breast (and other) cancer.  We just have to do better on this score.

And in some ways that's why I'm thankful for the advances in computing technology that have given us the tools of social media.  Because the existence of social media is keeping cancer in the public eye in a way that is confronting and personal, and in a way that reminds us all, that cancer can strike anyone and at any time.  Cancer doesn't discriminate. Mrs. Edward's' death and the collective online coverage and dissemination of grief clearly displayed a personal reaction that went far beyond that which a simple newsprint obituary would have evoked.  Indeed, I felt incredibly sad that yet another woman had died from this disease, but I was almost guiltily glad that her fame and celebrity, and associated online persona was bringing much-needed attention to the fact that metastatic breast cancer is for many, a fait accompli, to which death is the final outcome, despite the proliferation of treatments and the very best in medical care.  And it is from this perspective, that I hope for myself and the many other women dealing with this insidious disease,  that the public won't soon forget exactly what it means to be diagnosed with breast cancer.  Mrs Edward's death should serve as a call to action to do better in the fight to combat and eradicate this disease and we must keep talking about it and using social media to keep the message never far from the public consciousness.

For those of us living with cancer and other serious illness, social media has allowed us to connect as a giant virtual support group where we find like-minded individuals and where we are able to shout our frustrations to the universe without judgement.  We can find information at a moments notice and count on the fact that someone will always be there who's going through exactly the same thing.  Even though we generally never meet these virtual compadres or form a relationship beyond our online forums, discussion threads, blog comments, twitter feeds or Facebook pages,  there's something incredibly powerful in being part of a group mindset, in dealing with emotions and challenges of catastrophic illness.  Although many of us come with completely different viewpoints, different strategies for coping, and some come simply to read and ponder, whilst others are motivated to activism of some sort, there is comfort in knowing that you are not alone.  In fact Chemobabe in her latest post entitled "Good Company" articulates why we have this innate need to seek each other out  when she said:
"We survivors need each other. We live in an emotional reality that might be conceptualized but not fully understood by others who are outside of our experience, no matter how much they love us. It is often a lonely place."
Ultimately, living and dying in the age of social media may seem incomprehensible, and even abhorrent to some. But it does serve a purpose, especially for those dealing with serious illness.  Feelings of isolation and inherent loneliness are common problems - often it's easier to write about what's going on than it is to talk with close relatives or friends, and there is certainly therapeutic value to be gained from being able to honestly articulate what you are feeling by shouting anonymously to the universe.  You are being heard and you are not insignificant.

And this is why I think the dying lady felt the need to blog her final moments to the world.  Because she wanted to remind the world that she still mattered.  And that she still had something to say.  And this is also why Elizabeth Edwards chose to publish her final words via her Facebook status.  Because she too, still wanted to be heard.  And that's all any of us want.  Just to be heard.

It's kind of interesting to think that our blogs, Twitter feeds, and Facebook pages stored as binary code and bits and bytes on a server somewhere, may one day become our opus.  In perpetuity, we can continue to be heard.

So my friends, I say to you.  Keep writing.

People just want to be heard

13 comments:

  1. yr post reminds me of documentary my bro did a couple decades ago (needless to say - waaaay b4 sm): following a 12-year old lukemia patient through his last days. healthcare professionals were aghast at invasion of privacy: kid felt completely differently: opportunity to be a 'star' instead of a sickie, and to help shed light on the forbidden topic of dying. I bet if it were happening 2day, he'd be be an sm star - I'm sure many would take strength and find solace..others would find it too painful to watch his light fade to black. Thanks for sharing your thoughts. so timely. so meaningful.

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  2. Kathy thanks for your comment. Dying is an uncomfortable topic for most people to deal with. Unfortunately it's an issue that those of us in the cancer community confront every day, although many outside of that world simply don't want to talk about or acknowledge it. But it is a hard fact. I for one welcome social media as a way for us to remain relevant and heard even in our darkest moments. Keeping cancer and other catastrophic illness at the forefront of public discourse is another way that I think social media can be used to our advantage. We shouldn't be afraid of embracing this technology.

    Sarah - always a pleasure !

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  3. Anna, There is so much in this post I don't even know what to comment on. I guess you must have summed it all up quite well! I feel fortunate to live in this age of social media, especially to be part of this blogging community. Like Chemobabe said, I think we need others like ourselves. A year ago I would've been mortified to tell my "secrets" to the online world and now here I am putting it all out there, tho granted only a small number of people are really interested - and mostly it's others with cancer. I also agree the social media is a way to keep cancer (and all diseases) in the forefront so the public cannot forget. I think we perhaps underestimate our power. I'm not sure how I feel about the dying woman posting, but who am I to judge? Anyway, great post. It got me thinking, so thanks!

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  4. Thanks for coming by Nancy. This post took me a long time to put together, and I had many hours of self-reflection, and trying to figure out what I thought was important after the events of last week. Honestly I'm not sure what I'd do without my online community. Probably go quite mad I should think ! But I think what's important here, is that if we all keep writing, the world will listen sooner or later. And you are right. We do underestimate our power !

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  5. Anna, so well said on every level. I just recently discovered the reach of social media. Before I started blogging and reading other bloggers, I had no idea. It's a weird mix. I think it's easy to share very personal info through social media because in some ways, it's still just a void. Where's it all go, but in other ways, if you know your audience is there, as maybe the dying woman did, or Elizabeth Edwards, than what better way to reach them all at once.

    I don't know, there's so much here to think about, but I'm encouraged everyday by the women I've come across in this community and thankful to have found it.

    Well done.

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  6. Thanks so much Stacey. Your comment totally validates everything that was on my mind as I was writing this post. I'm encouraged too by the wonderful, smart and sassy women that I've met via social media. You included !

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  7. I have contemplated the role of social media in my life these past two years many times. And I must say that without the peer forum I found soon after my diagnosis, I would have lost my sanity. Social media, blogging, Facebook have all ended up playing a significant role in my survivorship. Thanks for the post. It's a brand new world out there. And I, for one, am grateful for it, with all suitable caveats in mind.

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  8. I agree Kathi that social media has been a sanity savior for me too. It's been wonderful to connect with so many other women going through the same thing and being able to share in a way that's both confronting and comforting. I still wonder how women coped in the days before the magic of the Internet. There must have been tremendous feelings of isolation. Thanks for commenting!

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  9. Thank you Anna, well said.

    Nancy- diagnosed this summer with stage 2 breast cancer, currently undergoing chemo......

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  10. Wonderful, wonderful post Anna with plenty to chew on! I wrote this week about the important role of community - both on and offline - in sustaining us emotionally. When people are overwhelmed by adversity and feel hopelessness or despair, it is their contact with other caring people that lifts them up. I am so glad I have found this to be true for me through social networking.

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  11. Hi Marie.....yes it so true. The power of social media to change people's lives for the better is something which I think we've only just begun to fully realize...thanks for your comment.

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  12. Thank you for this, Anna. I know I'm very glad to have 'met' you.

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